Ticked Off

State health officials will meet this week to evaluate complaints from dozens of Malibu residents who believe they have contracted Lyme disease, a potentially debilitating illness that locals fear is a growing threat on Los Angeles hillsides.

County health officials, however, say they can’t find any evidence of disease-bearing ticks or human disease, reviving a charged debate over what Lyme disease is and how it should be diagnosed.

An infectious illness carried by freckle-size ticks, Lyme disease is usually associated with rural Eastern towns and outdoor enthusiasts who like to tramp through weedy forests. But in Malibu, where the wild brush creeps close to the sprawling ranch houses, at least 50 residents believe they’re suffering from the malady and are clamoring for attention from local health officials.

Yet the very nature of the disease is making their suspicions hard to prove: The Lyme bacterium causes a range of symptoms common to other illnesses, making it extremely difficult to diagnose. Even tests for the disease are not definitive, experts said.

Malibu residents with paralyzing joint pains, flu-like symptoms and throbbing headaches have shuttled from doctor to doctor, trying to find one who can identify the cause of their suffering. Some have been told they have arthritis; others, multiple sclerosis.

So far, two doctors have diagnosed at least 15 Malibu residents with Lyme disease, and many more suspect they are infected.

The residents’ complaints have sparked interest among state health officials, who will assess the situation later this week in Sacramento and decide whether to launch an aggressive testing campaign in Malibu.

“There’s a lot of evidence pointing to the fact that in some key areas in Southern California there is a problem which really isn’t getting followed up,” said Richard Davis, a public health biologist with the state Department of Health Services. “What makes it very frustrating for myself and even more so for the patients is that there seems to be an exceptionally large number of physicians who deny that Lyme disease exists in this state.”

Still, Los Angeles County health officials, who bear much of the responsibility for disease investigation locally, are skeptical.

“I don’t think we have good evidence that all of the people who think they have this disease have this disease,” said Dr. Shirley Fannin, director of disease control programs for the county. “We’re willing to look at all their data, but we’re not seeing [the evidence].”

Within the last two years, county and state officials have searched for infected ticks in Malibu, but they could not find enough to form a pool for testing, she said.

“When you lack the technology to specifically define the disease, you can create a wastebasket of two or three cases and a hundred investigations if you’re not careful,” Fannin said. “We do not have that kind of resources.”

Malibu residents argue that county officials should at least be posting signs warning of the potential danger, but public health officials said that makes no sense without evidence of disease.

“Where would we post them?” Fannin said.

She and other health officials said there is little they can do to stamp out the pest-borne disease, beside emphasizing prevention. Insecticides would cause more harm to the environment than good.

Meanwhile, residents say health officials aren’t doing enough. “People don’t realize this disease is here in California,” said Barbara Barsocchini, who believes she was infected seven years ago while living in Malibu and the disease was finally diagnosed after five years. “I have begged for more education, for public awareness campaigns . . . and we have gotten no help.”

Residents have formed a grass-roots support and educational group. They’ve helped organize a September conference in Los Angeles focused on the spread of Lyme disease on the West Coast. And they’ve chatted on the Internet, sharing stories with startling similarities: the presence of strange, seemingly unrelated pains and a sense of panic at not knowing what could be wrong.

Catie Norris thought she was going crazy two years ago when she started experiencing a range of crippling symptoms.

First, Norris--a normally fit 37--year-old who owns a health club--had a bad flu. Then her joints hurt so badly she couldn’t even pick up her new baby. Her heart raced, her head pounded. Her leg shot with pain.

None of the many doctors she visited could figure out what was wrong. “I was desperate,” Norris said. “I felt like I was losing my life.”

She started writing her will.

Norris, like many others with similar symptoms, turned to medical journals and books to decipher her ailment. Finally, she hit upon what she saw as an answer. “Everything pointed to Lyme disease,” she said. “I had every symptom.”

Last month, she went to a local doctor who diagnosed the disease and put her on a regimen of antibiotics commonly used to treat it. Within a day, Norris said she felt like a new person.

“I feel like my life was saved--I didn’t think I was going to make it,” she said.

Norris thinks she was infected by a local tick while hiking in the hills around Malibu. She remembers being bitten, but she said she didn’t know to be on the lookout for Lyme disease in the area.

Although the local risk has not been determined, outside experts cautioned that Los Angeles County should not downplay the threat, and some urged a closer look.

“These are not crazy people who have been sick their whole life and are looking for one more excuse. . . . These are healthy, energetic people who link their illness to a specific event [of being bitten],” said Dr. James Katzel, head of UC San Francisco’s Lyme Disease Clinic and who is watching the Malibu situation. “These are very reliable historians--we need to send people to analyze their stories and figure out what they’re telling us.”

Experts say Lyme disease is not new to California, but it is much less common than on the East Coast or in the Midwest. Southern California’s arid climate makes it tough for ticks to thrive.

In Los Angeles County, health authorities say, there were only 28 confirmed cases of Lyme disease between 1989 and 1996, with at least 16 of them contracted elsewhere. No cases have been confirmed in Malibu, but experts acknowledge that the disease is underreported.

County health officials said that the two private doctors who have made the 15 Lyme disease diagnoses in Malibu have not yet provided complete reports to the county, as required by law. The doctors refused to comment.

About 1,500 cases of Lyme disease have been reported statewide since 1989, and the Western black-legged tick that carries the bacterium has been found in all but three counties. But the ticks are mostly concentrated in Northern California.

The ticks commonly are carried by deer, but they also burrow in rodents and other small animals. Often, a person who has been bitten by an infected tick gets a distinctive bull’s-eye rash and flu-like symptoms. Left untreated, the disease may attack joints, the nervous system and even the heart. In rare cases, it is fatal.

Experts say Lyme disease is one of the toughest illnesses to diagnose. Doctors often have to spend up to four hours talking to patients and learning about their risk factors and symptoms. Tests--which detect the presence of disease antibodies--are sometimes faulty, especially when infection is recent, and they are not always used for diagnosis. Often, it’s a matter of clinical judgment, which is somewhat subjective.

“Lyme disease is controversial among physicians because some physicians see it everywhere, and make the diagnosis on pretty shaky ground,” said Dr. Alan Barbour, a professor of medicine and microbiology at the UC Irvine and an expert on Lyme disease. “As a reaction, a lot of physicians have given up on it.”

Further complicating the issue is the federal government’s use of a much narrower definition of Lyme disease than many physicians follow. Officials with the Centers for Disease Control and Prevention in Atlanta said their standards are designed for surveillance, not diagnosis and treatment.

However, Dr. David Dennis, coordinator of the centers’ Lyme disease program, said the federal definition ought to cover more than 90% of Lyme cases.

Some experts say physicians are sometimes reluctant to report suspected cases because in the past, when the definition of the disease was even more vague, some doctors faced possible sanction for overdiagnosis.

Adding to the controversy and confusion, patients from around the country have joined the debate as well, demanding more research into the diagnosis and treatment of the disease.

Many health officials said that that avoiding a pest-borne disease is largely a personal responsibility.

“The idea of tick biting is awful--the idea that it could give you an illness is doubly terrifying,” Fannin said. “But there is no way to cleanse the world of ticks. You can only avoid ticks, and that takes personal knowledge and action.”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

An Elusive Illness

Lyme disease can be difficult to diagnose because the tick-borne bacteria causes a range of debilitating symptoms that are often interpreted as other diseases. Doctors have diagnosed Lyme disease in at least 15 Malibu residents, but county health officials say they can’t confirm a widespread problem without extensive medical evidence. Here is a look at the infectious malady:

SYMPTOMS

Tick bite

Bulls-eye rash

Flu-like symptoms

Joint pain

Fatigue

Headache

Lack of concentration

Facial paralysis

If you believe you’ve been bitten by a tick, see your doctor immediately.

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PREVENTION TIPS

Wear long, light colored clothing when outdoors, including long pants tucked into socks, long-sleeved shirts and hats.

Use tick repellant spray on outside of clothes.

Avoid long grassy areas. When walking on trails, walk in the center and avoid the brush.

Look for ticks after recreational activities. They usually hide behind knees, neck, groin and back.

If you find one, carefully pull out without tearing the head.

Note: Most ticks need to be embedded for 12 to 24 hours to spread the disease. State health officials say only 1% to 2% of ticks in California carry the bacteria that causes Lyme disease.